Immune /natural killer cell treatment when ttc or pregnant (aka the 16th pred thread!)

[sunnyday01]

This is a thread for those diagnosed with high or very high natural killer cells and trying to concieve or are pregnant and taking steroids/intralipids etc

Newcomers very welcome

Great news Sunny!! So happy for you.

I think we all have those bleak moments, especially when people around us get pregnant. Some of my friends are onto number 2 or at least thinking about it and I sit there thinking I ONLY WANT ONE!! Two would be lovely, 3 bloody amazing but i'll be over the moon to have one.
DH just casually asked me if I wanted anything at supermarket.... my reply - a working womb and immune system! We both laughed. It's a coping mechanisim bt i'm glad that even after such sad times I haven't lost my ability to laugh.

I'm going to sound very naive but what LAD and DQA match... i've seen it mentioned and not really understood .

Oh and AF arrived!! And she's a painful bitch!! Now to start ttc again...

Yay Seeking! Glad AF is here! How long are you cycles? Looks like we're cycle buddies for now!

How long is your cycle, Trying?

Yay to AF seeking! Whoopy! my cycles are about 26-29 days it varies a bit. the dq stuff it's so complex and controversial. It's to
Do with matching genes with ur DH and mounting NK cells if u are too similar. I don't fully get it... I ignored it at my ivf clinic when they tested it-I didn't even know I was getting tested for it! I know Mr s doesn't believe in it!
My af is hurting like hell too! Didn't manage gym today hope I can tmrw x

And I haven't bothered looking up/into lad! It's just too much!

ahhh I see....Sounds confusing!!
My cycles are pretty long, normally 29-31 days. HATE having long cycles. It means I ovulate late (cd18 on average) , then when i am pregnant my dates don't match up with the average and theres all this 'it's small for gestational age' nonsense. Obviously I think WAY to much into things!

i used to have 29/30 day cycles, LH surge day 15 and then after my second miscarriage they shortened to 27ish LH surge day 14. So yours may change, sup pregnancy can permanently change them.

If anything mine have got longer
I've taken soy isoflavones in the past, they brought it forward to cd14-16. Might try that again

seeking it sucks having long cycles. mine tend to be 33 days long. I remember screaming after my second mc '33 fucking days means I don't even get twelve goes a year'!

Sharing the long cycle pain! Mine have always been 35-37 days so after my last ERPC (about 2 weeks after HB stopped) it took 5 weeks for HCG to be 0 then another 5 for first period - 3 months in total to be over - FFS!

I think metformin may have shortened my cycle by a few days this month though - high fertility since Mon & peak this morning & DH is away Mon-Thurs - so I am really grumpy & wondering whether to bother with pred from Ov this cycle.

Did you ladies do it every month or only if reasonable chance of sperm meeting egg? I'm concerned about side effects - particularly gastritis or insomnia as I don't usually eat till lunch time & osteoporosis with cumulative courses...

morgan I'm only on my first cycle ttc after mc so can't advise about the cumulative effects. But now that I am on a regular shift pattern my plan is I only take my thyroxine and wobenzyme in the morning. I take the pred and omeprazole at lunch, with food, and I take my aspirin, vitamins and second dose of wobenzyme before bed.

Hi Morgan. I did it monthly for about 5 months and had no issues. I just made sure it was 2 days post my peak and stopped it day 10 if bfn. The insomnia wasn't too much of a problem except twds maybe the last day or 2...(but prob in my mind more than anything) ..hope ur ok on it! Maybe give it a go and u can always adjust timings etc. Try have it with food though!

Hey Ladies

Yes long cycle pain here too...Now day 40...no AF just migraines! Got Acu later today which haven't had for months so fingers crossed!

Morgan I took pred for about 7 months and had 2 pregs/mcs and was ok (my gp even made me have a dexa scan for bone density and I came out all ok)

Seeking I always ov really late (day 19-21 but has been 23/5). do you ever have issues with your LP?

Great news sunny - so pleased for you :)

I have good news too...No IVIG needed for me. Body responded very very well to steroids, so well we were all a bit stunned (I still don't understand why they didn't before so will always remain a mystery). Of course it doesn't mean I will end up with a baby for sure but for once I feel like something has worked out good for a change! There is a glimmer of hope again!

x

That's fantastic news Determined!! You must feel relieved!! My LP is generally 11/12 days, not brilliant but not bad either.

Fantastic Determined!!! What was the difference between this steroid trial and the one before?

Yeah I do feel better - I think its just that glimmer of hope back :) Ahh that's not too bad seeking...mine was 3 last cycle. I will see how I go this month but then prob will be back onto super ov.

Drttc do you mean change % wise? It was 35% and needed to be below 20%. Yesterday it was 8%. [shocked]

ha ha - that was mean to be a shocked face

Yay! That's great determined! What a relief! When r u starting SO?

Thanks trying-Probably not for another cycle or 2...just need one last try at getting cycles better and if not then I'm on it!! I've got hydroxy in the mix too now just to see if it helps?! Another womb/someone else's blood probably better but not sure that's possible...

Seeking I know you were probably asking trying but this is what I found about DQa and matches (copied from someone's blog but it explains it quite well. I had the test done as I just wanted to make sure we checked everything and we have no match...
It is really difficult to say what is and is not important when TTC with immune issues
SO WHAT IS DQA AND HOW DOES IT IMPACT TTC?

The DQa gene sits on chromosome 6. Part of our immune system one of its key roles is helping the body identify and prevent foreign antigens from attacking and making us sick.

When it comes to DQa we each get a representation from our mother and from our father. These are represented in numbers - eg 1.02, 1.01, 05.05.

Having a genetic match for DQa actually doesn’t impact the health of your embryo or baby.

Instead a match impacts the connection between the paternal DNA contribution (sperm) and the maternal body (uterus).

Normally something in the sperm’s DNA sends a signal to the uterus that this foreign body (embryo) is ok, allowing it to implant.

In the case where the male DNA contribution of the embryo shares the same DQa gene as the mother this message is thwarted.

The uterus then fails to recognise the embryo as a separate body, instead seeing it as its own “self”. The immune system kicks in with NK cells to eliminate the embryo as it views it a risk.

In layman's terms - owing to one number, on one chromosome, my body systematically attacks and rejects our healthy embryos as it can’t tell the difference between my own DNA and my husbands!!

My understanding is that DQa can be the cause of:

Recurrent miscarriage
Failure to implant
The activation of NK cells in the uterus (in response to repeated implantation of DQa embryos)
Secondary Infertility (in response to a DQa pregnancy making it full term causing a build up of NK cells)

Sunny yey great news about the scan, very happy for you....

Determined great news about your retest, it's always such a relieve when the drugs work.
About your long cycle - I had a couple of random long cycles - think 45days - and it seems to be connected with my thyroid. I even ovulated on those cycles, just very late. Fingers crossed the acupuncture will sort it out for you.

Thanks for that dq stuff london, I think I partly ignored it as was only 25 percent match and saw that wasn't the biggest deal and il and steriods should deal with it. In my head this last miscarriage was Chromosonal. I was on il pred and hydroxy (although only 2 weeks pre bfp). So I don't know wot else can be done if it wasn't chromosomal :(

Trying of course you follow what your clinic recommends. I wanted to know what / if you were doing something about low LAD as I wanted to hear someone else's opinion on it. There are people who swear by LIT and people who didn't get any result from it.
I personally would have it as don't think it can cause any problems but resent spending £2K at dr gorgy for it as I don't feel that it addresses my main problems. The way your new clinic goes about it seems to be the right way -monitor and deal with any issues with pred, intralipids, IVIGs.
I believe you will be in the best hands there. From what I heard it is pretty full on but they do get results...

Thanks london. That's wot these forums r good for-exchanging specialist advice! Between us all we will have seen a lot
Of top speciliasts! It's so annoying they don't all agree and no one really knows why rm happens....who r u under at the Moment then? I'm sorry I can't fully rem ur history-have u had any misvarriages on Tx? Have u managed to get any tested to see if they were chromosnomal or not?

Trying cross post here.
It is a minefield. Especially when Dr don't agree on treatments and there is no standard protocol.
Dr Beer is very good at explaining all of this LIT/ DQa match malarky in his book.
I personally believe that this was the cause of my mum's miscarriages. I am the oldest one, she had loads of issues/ stayed in hospital when pregnant with my sister and miscarried 3x after. Than she was told off by Dr for trying (can you imagine?)
Mine is 0501 0501 which dr beer said can trigger immune response in following pregnancies even without match. I explained all this to my mum and she actually cried and it looks like that she blamed herself for doing something wrong and causing her miscarriages for all those years. She had some sort of closure, really.
By no means I am saying this is what is causing your problems. Just that it can explain miscarriages but generally with second pregnancy etc when the first one triggers immune response....